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Monday, September 12, 2011

Voices, Pain, and Hope

“Hey, Sheila, just touching base,” my call had gone to voice mail, as I pulled out onto the highway early Saturday morning on my way to the Walk to End Alzheimer’s. “It’s a beautiful day and I don’t think it is going to r-a-i-n.” I spelled the word rather than say it aloud. All week the forecast had been for a beautiful day, and two days ago, it changed to a 40 percent chance of rain.

At the fairgrounds, Bobby and Kim had arrived with tables and chairs. Since this was my thirteenth walk and their first, I showed them where we needed tables. A year’s worth of planning has gone into making this day special for the people who know the pain this disease leaves in its wake.

Banners flew high, balloons were delivered, and my books lay on the table ready to sign. As I signed books, I heard their stories.

“I used to walk for Jimmy,” my husband’s cousin Shirley told me. “Now, I walk for my mom too. She doesn’t know me anymore.” I heard sorrow in her voice and saw pain in her eyes.

“I just lost my husband,” an elderly lady said as I signed her book. “He had Alzheimer’s.” Her family was one of our new teams.

“I’m so sorry,” I said. Our eyes met and we connected—person to person, woman to woman, widow to widow. We shared through silent communication the knowledge of watching a loved one change, and oh, so slowly, fade away.

“You are Lynne’s sister,” I said as I looked up and saw a woman holding a small dog in her arms. Lynne, my friend, had early-onset Alzheimer’s. “I wrote about her on my blog, but it will be in next year’s book.”

The stories lay on my heart. I heard about grandparents, sisters, brothers, uncles, spouses, friends, co-workers… Voices shared special memories and snippets of lives lost to a disease whose only survivors are family members like those standing in front of me.

Oddly, enough, the day was festive. The sorrow pushed aside as we do what we can—support the Alzheimer’s Association and wear our purple to create awareness that Alzheimer’s is a formidable enemy and we are going into battle. The music was upbeat and the teams lined up to begin the walk.

Sheila and I carried the banner through the arbor and as we headed out onto the fairgrounds, her son Phillip took over for her, and Phillip and I led everyone onto the route. We passed signs with Alzheimer’s information: Every 69 seconds a person develops Alzheimer’s. How many minutes does this walk take?

As we looped past the midway area of the fairgrounds, Phillip said, “People are just now coming out.” He was right. This had to be a record-breaking crowd.

A few people passed us up. My nieces Taylor and Alex decided they wanted to run and moved ahead of us. Everyone was greeted with applause and “Chariots of Fire” music at the finish line.

While we were gone, numbers were tallied. Sheila announced that we had more than 350 walkers and raised more than $23,000, surpassing all our goals.

We gathered in a grassy area to release the balloons. Sheila brought began a countdown. Purple balloons sailed toward heaven with names, messages, and prayers written on them. Through my own tear-blurred eyes, I noticed a young couple holding each other tight as they both cried.

Through the pain, I heard whispers of hope. We want this cruel disease to end. This vicious cycle of disease, loss, and certain death needs to be stopped. We are families and friends of 5.4 million Davids fighting a formidable giant.

The walk ended, goodbye hugs shared, the cleanup finished, and we went our separate ways. On the drive home, I felt like pinching myself. Was the day really over and as successful as I thought, or was I just dreaming again?

My elation with the success of the day, so perfect, was replaced with other more sobering thoughts. I couldn’t call my friend Ted to tell him the great news. His numbers are still programmed into my cell phone, but he is gone. The stress of caring for a loved one with Alzheimer’s can be deadly for the primary caregiver.

For a crushing moment, I’m overwhelmed with a vivid image of Jim and painful loss. Then my phone rang and brought me back to the present. Life goes on, and I have much, much more work to do. This battle isn’t over yet!

As I unloaded my car, I heard the distant rumble of thunder. Droplets felt cool on my skin and refreshing to my spirit. It was a perfect time for r-a-i-n to begin a new cycle of life.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

Blog Awards

Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

When Jim returned from Vietnam, he was stationed at Fort Riley, and we spent about a year and a half living in Manhattan, Kansas. With ba...

Linda's Blog Books

Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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Alzheimer's Anthology of Unconditional Love by L. S. Fisher

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I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.